Three years ago, I was 38 and pretty healthy. I did Pilates five to six days a week, and I ate a diet of lean protein and fresh fruit and vegetables. I was the one in the office people came to for advice on choosing a healthy lifestyle. My body was in great shape — or so I thought.
And then I found the lump … and then I got the call. Hearing that I had breast cancer was like suddenly being covered in spiders. I didn’t know why it happened, and I wanted it out of me in the quickest, most efficient, and most effective way possible.
I wanted to make sure that it was never coming back, and that it wouldn’t hurt me any more than it already had. After the biopsy, they estimated I was stage 2b or 3a, which meant that the tumor was sizable and the cancer had made its way into my lymph nodes.
Having been fairly healthy all my life and much more focused on art than on science, I really didn’t know what purpose lymph nodes served. But I learned very quickly that “the cancer has spread to your lymph nodes” is not something you want to hear. That, ladies and gentlemen, is a game changer. After I got the news, I had some decisions to make. A lumpectomy was not an option. The tumor was big, and it had to go. With the help of my breast surgical oncologist, Dr. Jeannie Shen, I made the decision to remove my right breast. Two weeks earlier, after coming home from a Pilates class and feeling fit, I found a lump — quite by accident — and now I was having a mastectomy.
As crazy as it all was, I went into “go” mode. If there’s one thing I’m good at, it’s planning, coordinating, and being prepared.
I dove head first into what I needed to know to make the recovery from my mastectomy the best it could be. I talked to anyone I could find who had been through breast cancer treatment. And I learned a great deal in a short amount of time. Overall, the most important piece of advice I received was from a friend who said, “Whatever you think you can do post-op in terms of activity, you should probably only do half of that.” Wise words from a woman who knew I thought I would be the exception to the rule and be back to Pilates within two weeks tops.
It was quite a surprise to find that a week after surgery, I couldn’t even get the refrigerator door open on my own. Holding a fork was like lifting a weight, and walking from the bedroom to the bathroom to the kitchen was the most exercise I could handle. But it was OK. I’d simply reached a moment in my life where I learned that I am not invincible.
I learned quite a few other things too. Some came from women who went through it before me. Some I learned along the way. They all helped my caregivers and me more than I can put into words, and I hope they can help you on your road to recovery.
1. Shop big and stock up.
Stock up with two weeks’ worth of foods that you like and are easy to prepare. Plan on enough staples and non-perishables to last you a month. Consult with your doctor about what you might need in terms of medical supplies, and be sure you have enough for the duration. Even if you have someone helping out, having items that you like on hand will make life easier — and will give you a bit more control.
Add a small cooler to your list if you don’t already have one. Getting in and out of bed for a drink, a snack, or an ice pack when you’re not at your best can be a bit much — particularly in the middle of the night. I found having a mini-cooler beside me in bed to be incredibly helpful.
2. Make a realistic meal plan.
Recovery is a long haul, and at a certain point, your caregiver will want a night off from cooking. Prepare for that possibility by collecting menus and contact numbers of restaurants you like that deliver. Mark them up with your favorite choices ahead of time to make it easier on yourself when you’re in a pinch.
3. Fill the pill box.
One of the best pieces of advice given to me by a fellow breast cancer fighter was to get a prescription for everything I would need — or might need — and fill it before surgery. Your doctor can compile a comprehensive list of prescriptions and over-the-counter options for you. Having medications at the ready relieves the stress of tracking down your doctor or getting a prescription filled after hours or over a weekend.
4. A lanyard can be a lifeline.
With a mastectomy come drains and the need to manage them. A lanyard is a sturdy piece with a hook that hangs around your neck and is easy to clip a drain to. I’m not sure how I would have been able to take a shower or get dressed without one. Sporting good stores tend to carry them, and they’re one click away online.
5. Take inventory of your wardrobe.
A mastectomy is generally accompanied by a lymph node dissection — not to mention the stitches and drains that accompany the surgery — which means that your arm’s range of motion will be limited. Keep soft, loose clothing handy so you don’t have to spend time and energy searching for it. Organize your closet and dresser drawers with clothes that you can easily slip over your arms or step into. I was diagnosed in April, so I found a lot of loose, beautiful beachwear that I could effortlessly step into and out of after surgery.
Get fitted for a post-op garment and a lymphedema sleeve before surgery so you have it if you need or want it. I went to Nordstrom for my post-op garments. I wanted to shop in a mainstream environment, and they take insurance and have specialists on hand.
I chose an Amoena camisole that zipped on so I didn’t have to lift my arms. It also had an interior pocket to hold my drain. Wearing the camisole made me feel safe and secure about the status of my healing body.
I did not get fitted for a lymphedema sleeve until after my arm began to swell. That is one thing I regret. Lymphedema is a common side effect of a mastectomy, so it’s smart to be prepared.
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6. Pump up your playlist.
The power of music is extraordinary. It can be amazingly calming, and most doctors will let you take it everywhere. I had music playing the entire time I was waiting to go into surgery, and they even let me bring my iPod into the operating room with me. Music comforted me until I went under, and then when I woke up. It was wonderful.
Playlists and songs also make a great gift. If someone asks what they can do for you, consider asking them to send you music. A brilliant co-worker sent me full playlists for every step in my cancer treatment. It was such an incredibly powerful gift during my emotional battle, that I consider it to be just as important to my healing as my diet, exercise, chemo, radiation, and surgery.
Some of my favorite cancer fighting songs were: Brand New Set of Wings by Joe Purdy, Survivor by Destiny’s Child, Eye of the Tiger by Survivor, Beautiful by Christina Aguilera, and Giant by Melissa Etheridge.
7. Practice helpful fitness moves.
A mastectomy and lymph node dissection will limit the use of your upper body. Getting into and out of bed, getting up from chairs, and using the restroom can be challenging. Talk to you your doctor about moves and exercises that can prepare you for post-op.
Having a background in Pilates was extraordinarily helpful. I engaged my lower body to plié in and out of the sitting position, and learned how to roll carefully to get into and out of bed.
8. Meet me at the movies.
Post-op is a time for resting, but it’s not always easy to do: The emotional impact of a mastectomy can be heavy. Compile a selection of movies and TV shows on DVD — or add them to your Netflix watch list — that will make you smile and allow you to escape. This is also a great suggestion to give friends, family, and co-workers when they ask what they can do or would like to send a gift.
9. Account for anything with a due date.
Take a look at your calendar for the next month and make a plan before your mastectomy so that all you have to do after it is heal your body and soul. Prepare checks, set up auto pay, and give two or three people you trust access to your funds to help with anything you might need, from a sandwich delivery to your rent payment.
10. Get yourself and your team organized.
Get your phone tree out and put the most organized person on it in charge of your cancer-fighting bible. I made a binder that I took everywhere and was organized so that anyone could use it as a reference. In addition, I shared a calendar of events and a phone list with all of my friends, caregivers, and co-workers so no one would ever be at a loss for what to do if I needed help.
Compile a list of contact numbers for volunteers who will run errands, check in on you, drive you to a doctor appointment, and everything beyond. (It’s a good idea to note on the list the best days and times people are available to lend a hand.)
Keep track of every medical professional, what they do, how they can be reached during and after business hours, as well as directions to get from your home to their office.
Share a calendar of all of your appointments with everyone on your cancer-fighting team.
Make a copy of all of the tests you’ve had or have orders for, and keep them in your binder. Save multiple copies of your insurance card, photo ID, power of attorney, medical history, and your official diagnosis, as well as any other relevant information surrounding your treatment.
By reading this article, you can tell quite a bit about who I am as a person and how I aligned my preparations with my personality. Everyone’s mind and body is unique, and a person’s reaction to a diagnosis and treatment can be difficult to predict. Just know that this is the moment where you are allowed to be selfish. Do what you need to do to get through it.
Everything listed here helped me a great deal, but I always checked with my medical team before making any decisions. I encourage you to do the same with your cancer fight. Stay focused, kick ass, and live your life to the fullest.
About Allison W. Gryphon
As a response to Allison W. Gryphon’s 2011 cancer diagnosis, she produced and directed the feature documentary film “What The F@# is Cancer and Why Does Everybody Have It?,” which was recently released worldwide as an iTunes exclusive. She also launched The Why? Foundation, a cancer support nonprofit dedicated to supporting people through the day-to-day of treatment. The program includes a practical section on Cancer Answers, and offers many creative means of support, including the Piper Gore Fighting Cancer with Fashion program, the coming Jim Krueger Fighter Cancer with Comics program, and a Fighting Cancer with Music program for which they’ve partnered with The Playlist Generation and Spotify. The What? Series, a collection of web-based programs, has been released. To learn more, visit: www.thewhyfoundation.org.